Discrediting Opposition

The propaganda has already begun in an attempt to discredit doctors, researchers and those concerned about another Lyme disease vaccine.

Articles 2017- Lyme Vaccine Part 2

The New Scientist- Lyme Disease Is Set To Explode And We Still Don't Have A Vaccine, March 29, 2017 (Plotkin, McSweegan, Valneva, CDC)

Housewife Plus- Thanks to Anti Vaxxers There Is Still No Lyme Vaccine For Humans, April 3, 2017 (Ostfeld, Plotkin, McSweegan, Valneva, CDC)

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Articles by vaccine promoters have been attempting to discredit seriously ill Lyme patients, volunteer patient advocates and Lyme treating doctors in preparation for the release of a new Lyme vaccine.

Serious problems with the first "cash cow" vaccine were originally exposed by volunteer Lyme patient advocates, doctors and Lyme disease organizations for the good of the public.

Knowing that negative exposure was one of the main reasons for the failure of the original vaccine, those with financial interests, led by those with a long history of discrediting sick Lyme patients, have since worked to discredit the Lyme Community, before a new vaccine is ready to hit the market.

Here we go again!

Lyme Vaccine- Part 2.

The articles below are similar to a letter written by a NIH employee* who was tossed out of the federal Lyme disease program, sued and sanctioned for harassing Lyme patients and multiple Lyme-related organizations over the years.

*NIH Employee, Edward McSweegan, has recently been working with Stanley Plotkin, a long time vaccine promoter. Both are infamous for their attempts to discredit volunteers, patients, organizations and successful treating doctors in the Lyme community and other venues. Mr. McSweegan is still paid by the federal government with YOUR tax dollars as he continues publishing his vile, false allegations and opinions, and delights in carrying on with his wicked rampage against anyone with views on most topics that are in conflict with his own.

Nigrovic and Thompson [1] provide an instructive summary of the rise and fall of the Lyme vaccine (LYMErix™). The history of LYMErix™ continues to offer important lessons about the interactions of science and society, and how the archival and tautological power of the internet complicates those interactions. Two important points about the ongoing LYMErix™ controversy should be highlighted.

First, many Lyme disease patients and activists initially supported the idea of a vaccine against Borrelia burgdorferi. They lobbied Congress for more research, and persuaded U.S. Senators to urge the Food and Drug Administration (FDA) Commissioner ‘to hasten the agency's review of vaccine applications’ for Lyme disease [2]. Yet, the quick approval of LYMErix™ generated not satisfaction among activists, but hostility.

A number of people who are familiar with Lyme advocacy groups or have followed the internet discussions about Lyme disease during the last decade suspect the hostility to LYMErix™ had less to do with questions about its safety and efficacy and more to do with a general distrust of academic and government scientists [3], and the potential loss of influence and funding among many activists.

Activists and self-described ‘Lyme victims’ had devoted years of effort to raising an obscure tick-borne nuisance in Old Lyme, Connecticut to a national reportable disease that attracted tens of millions of federal research dollars each year. They were courted by the press and had easy access to Congress and state house representatives. Many activists started tax-exempt foundations, held fee-based conferences, and set up websites to sell products and attract sponsors. Some even collected donations from vaccine manufacturers [4]. These political and financial gains occurred even as infectious disease experts were refuting the activists' portrayal of Lyme disease as a menacing national plague.

The licensure of LYMErix™ confronted Lyme advocacy with the added problem of how to sustain public anxiety (and donations), media attention, and political clout against the evidence-based reality of a bacterial infection that was antibiotic-responsive, non-fatal, non-communicable, geographically focused, and – now – preventable through vaccination.

The vaccine's imperfect efficacy, projected cost, and potential booster requirements were the immediate targets of activists' attacks. Ad hominem attacks on individuals involved in the vaccine trials quickly followed; stoked by a simmering animosity between many patient activists and clinicians over the appropriate diagnosis and treatment of Lyme disease [5,6]. These personal attacks – and anecdotal horror stories about Lyme disease in general and the vaccine in particular – took place on the internet.

This is the second important point about the successful assault on LYMErix™. By the late 1990s, most people were gathering information about vaccines and other medical questions from the internet and not from traditional media outlets as suggested by the authors [1].

Unfortunately, what people found online were activist websites filled with misleading information about the vaccine, personal ‘vaccine victims’ stories, and newsgroup bulletin boards offering a repetitive stream of misinformation, libel and quack treatments [7,8]. Aside from an occasional press release, journal article or FDA hearing, no effort was made by public health officials, researchers or vaccine manufacturers to counter the online denouncements of LYMErix™ and its supporters.

The public opinion battles over LYMErix™ were fought, and lost, in cyberspace. The battle over the next generation of Lyme vaccines is already underway [9]. Vaccine manufacturers and researchers need to develop communication strategies that will provide the wired public with accurate and compelling information about new vaccines and the public health benefits of immunization. It will be an expensive and complicated task, but so is the development and testing of a vaccine that no one will use.

Declaration of Interest

Edward McSweegan was the program officer for Lyme disease research at the National Institute of Allergy and Infectious Diseases at the National Institutes of Health during the early 1990s.

LymeDiseaseandthePoliticsofPublicAdvocacy

TO THE EDITOR— The recent summary of negotiations between the Infectious Diseases Society of America andthe Attorney General of Connecticut Richard Blumenthal suggested that the motivation for the Attorney General's actions was provided by Lymedisease advocates [1]. Groups such as the New Jersey LymeDisease Association and Connecticut's Time for Lyme have acknowledged their involvement [2], but Blumenthal's long record of legal and political activism on behalf ofpatients with Lymedisease suggests a significant degree of self-motivation.

Since at least 1999, the Attorney General has participated in Lymedisease rallies and conferences in Connecticut. In February 1999, he held a hearing on insurance coverage for long-term intravenous treatment ofLymediseaseand drafted a bill to mandate such coverage [3]. The next month, he sent a letter to the Legislature Insurance and Real Estate Committee that urged members to nullify the requirement for a second opinion in cases of “chronic” Lymedisease [4]. In 2000, Blumenthal was the keynote speaker at a Connecticut meeting about Lymedisease, andhe and his wife were the co-chairs of a 2001 benefit sponsored by theGreenwich LymeDisease Task Force. Later, he gave testimony by telephone to a New York State Assembly Health Committee hearing onLymedisease [5]. In January 2004, he organized another Connecticut hearing to “eliminate the common use of excessively restrictive federal reporting criteria and correct the underreporting of new Lyme cases inthe state” [6, p.6].

In 2005, Blumenthal presented achievement awards to a former Lymedisease activist and to a pediatrician, Charles Ray Jones [7]. Subsequently, Jones was summoned before the Connecticut Medical Examining Board for his treatment of children with suspected Lymedisease. In publicstatements about the case, Blumenthal said, “I'm very concerned there may be a perception, rightly or wrongly, that care for Lymedisease is discouraged by the charges against Jones” [8].

Since the announcement ofthe Infectious Diseases Society of America investigation, Blumenthal has continued to speak at Lymediseaseadvocacy events, including a country club event for the National Research Fund for Tick-Borne Diseases (http://www.nrftd.org) and a patient conference in New Haven. He has been listed as an advisor for theadvocacy group Time For Lyme. In 2007, he also appeared in a DVD docudrama about chronic Lymedisease that a reviewer described as manipulative, partisan, and heavy-handed [9].

“'Is there a perception that I am advocating a position? Yes,' Blumenthal acknowledged. But he insisted the perception is incorrect” [10]. However, a brief review of his active associations with Lymediseaseadvocacygroups suggests that the Attorney General's investigation was driven more by personal belief than by legal necessity or credibility.

Blumenthal's actions rightly have alarmed many scientists and physicians who are concerned about the political subversion of peer-reviewed science and evidence-based medicine. Moreover, his legal assault on treatment guidelines has heightened public confusion and patient angst about this common infection.